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Electra

Ok Is This Doctor Clueless?

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Ok here is the scoop. I took my daughter to a pediatric GI last week and it just so happens that it's the same office that my 5 yr. old went to back when he was 2. They tested him for Eosinophilic Esophagitis because he vommitted after every meal for the first two years of his life.

Well they said they could look back in his records to see if he had Celiac and I asked how they would have seen that if testing for EE and they assured me they would have picked it up. They claim they looked and he does not have Celiac.

Well I just looked up EE and they look in the esophogus and if they take biopsies they take them from the esophogus. How in the heck are they going to find Celiac in the esophogus?

What are my daughters chances at a diagnosis when they assure me that my son does not have Celiac but they never even did the appropriate biopsy?


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Ok here is the scoop. I took my daughter to a pediatric GI last week and it just so happens that it's the same office that my 5 yr. old went to back when he was 2. They tested him for Eosinophilic Esophagitis because he vommitted after every meal for the first two years of his life.

Well they said they could look back in his records to see if he had Celiac and I asked how they would have seen that if testing for EE and they assured me they would have picked it up. They claim they looked and he does not have Celiac.

Well I just looked up EE and they look in the esophogus and if they take biopsies they take them from the esophogus. How in the heck are they going to find Celiac in the esophogus?

What are my daughters chances at a diagnosis when they assure me that my son does not have Celiac but they never even did the appropriate biopsy?

I think you know the answer .. :ph34r: .. but what age is your daughter anyway? It can be very difficult to get reliable tests from very young toddlers anyway but equally they shouldn't then say "he/she doesn't have celiac disease...."

I don't know what I'd do, at one level I'd worry about their overall competance and also worry that as she gets older they will not be looking for celiac disease. If I were in your position I think I'd be looking for another pediatric GI.... who already knows about celiac disease.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Angie,

Your signature says that daughter has DH, so automatically she has Celiac.....so are you just looking for a ped GI to establish a relationship with or are you looking for testing?

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Angie,

Your signature says that daughter has DH, so automatically she has Celiac.....so are you just looking for a ped GI to establish a relationship with or are you looking for testing?

Good question lol!! My daughter has not officially been diagnosed with DH, but I know in my heart that is what she has. One of the reasons I KNEW I was positive for Celiac is because when I first stumbled upon information about the disease my daughter had a rash consistant with DH and we couldn't figure out what it was. There was just way too much of a cooincidence there, and over the years I had all the symptoms and my daughter has many other symptoms as well. The skin specialist was "AGAINST" a skin biopsy because it will only cause her pain that could be avoided if the biopsy comes back positive, so she suggested we have the biopsy first before we subject her to the skin biopsy.

She's only 2 and her blood tests came back negative, but I have a really hard time getting her to eat gluten because she gets sick. I have been pushing it a lot lately because we have the biopsy on the 20th of this month and she's been so sick the last few days all she does is sleep. She barely eats either, so I had to sprinkle bread crumbs in her beef stew the other day and I'm going to have to do the same thing with her potatoes and other foods to get her to continue to consume gluten until after the biopsy!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Good question lol!! My daughter has not officially been diagnosed with DH, but I know in my heart that is what she has. One of the reasons I KNEW I was positive for Celiac is because when I first stumbled upon information about the disease my daughter had a rash consistant with DH and we couldn't figure out what it was. There was just way too much of a cooincidence there, and over the years I had all the symptoms and my daughter has many other symptoms as well. The skin specialist was "AGAINST" a skin biopsy because it will only cause her pain that could be avoided if the biopsy comes back positive, so she suggested we have the biopsy first before we subject her to the skin biopsy.

Im not sure of the logic in that, I see the skin specialists point but that's from his perspective. From the perspective of you and your daughter you have to balance long term discomfort vs short term more discomfort for a skin biopsy... and

She's only 2 and her blood tests came back negative, but I have a really hard time getting her to eat gluten because she gets sick. I have been pushing it a lot lately because we have the biopsy on the 20th of this month and she's been so sick the last few days all she does is sleep. She barely eats either, so I had to sprinkle bread crumbs in her beef stew the other day and I'm going to have to do the same thing with her potatoes and other foods to get her to continue to consume gluten until after the biopsy!!

I'm not even sure the biopsy itself is very accurate in toddlers? Nor is it surprising for the blood tests to be positive in such a young child but I would have thought the DH skin bioipsy would be the most likely to give a real result?

I don't envy your position but you will have to make your own mind up, perhaps others know if the skin biopsy is reliable in toddlers, my feeling is it would be because well its either DH or not... and if it were positive you could skip the whole gluten challenge and biopsy and save a lot of distress.

Just my 2c...


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Man I just did a search on the net and there are no other pediatric gastro offices in our state. I'm just so tiered of the charade. How in the heck can they tell me that my son tested negative for Celiac when they were testing for EE. There is no way in heck they would know that. If they think he's negative because they didn't see it during the endoscopy then they have no clue how hard it is to see with the naked eye GRRRRRRRRRR. I could scream right now!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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Man I just did a search on the net and there are no other pediatric gastro offices in our state. I'm just so tiered of the charade. How in the heck can they tell me that my son tested negative for Celiac when they were testing for EE. There is no way in heck they would know that. If they think he's negative because they didn't see it during the endoscopy then they have no clue how hard it is to see with the naked eye GRRRRRRRRRR. I could scream right now!!

Is it not possible to take him to a normal GI specialist who has knowledge of celiac disease? I realise you want or prefer a pediatric specialist who knows celiac disease but perhaps it would be better to just find any GI specialist who knows it?


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Is it not possible to take him to a normal GI specialist who has knowledge of celiac disease? I realise you want or prefer a pediatric specialist who knows celiac disease but perhaps it would be better to just find any GI specialist who knows it?

LOL I've been trying to get her in with one of those too. I tried calling my GI's office so I can beg, but they are at a meeting. Lets hope they agree to take her as a patient!!

My concern is that "if they think you can diagnose celiac with an esophogus endoscopy" then how do I know that they will take the right biopsies and look at them through a microscope when they test my daughter? I don't want to have to put her through a test like this twice because I'm not confident that they performed the test correctly!!


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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LOL I've been trying to get her in with one of those too. I tried calling my GI's office so I can beg, but they are at a meeting. Lets hope they agree to take her as a patient!!

My concern is that "if they think you can diagnose celiac with an esophogus endoscopy" then how do I know that they will take the right biopsies and look at them through a microscope when they test my daughter? I don't want to have to put her through a test like this twice because I'm not confident that they performed the test correctly!!

I think its also a problem that even if they do take a good biopsy in a child so young they are notoriously unreliable anyway....

From what you wrote I kinda feel like everyone is passing the buck.. I realise its frustrating but perhaps take a step back and decide based on the expected accuracy of the various tests if its worth putting her through it right now...

If it were me and the biopsy is negative then I still wouldn't want to put my faith in it...

It must be killing you to have to gluten her as well.

In summary there are lots of good folks here, try and find out what is the reliability of the biopsy in a 2 yr old and what would be the accuracy of the skin biopsy for DH.

In some ways a negative biopsy can just be more confusing ...


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I think its also a problem that even if they do take a good biopsy in a child so young they are notoriously unreliable anyway....

From what you wrote I kinda feel like everyone is passing the buck.. I realise its frustrating but perhaps take a step back and decide based on the expected accuracy of the various tests if its worth putting her through it right now...

If it were me and the biopsy is negative then I still wouldn't want to put my faith in it...

It must be killing you to have to gluten her as well.

In summary there are lots of good folks here, try and find out what is the reliability of the biopsy in a 2 yr old and what would be the accuracy of the skin biopsy for DH.

In some ways a negative biopsy can just be more confusing ...

Yah and the gastroentologists office TOTALLY denies that an endoscopy in children as young as my daughter are unreliable. They say that is COMPLETELY NOT TRUE!! I guess a diagnosis isn't really necessary, but when she gets in school she WILL need the diagnosis, and I just do not want to have to put her back on gluten (after being off from it for years) just for a chance that something will show up. There is no doubt in my mind that she has it,as a matter of fact, I'm pretty sure my 5 yr. old has it too and he just came home from school AGAIN because he vommitted and he's fine (it happens all the time GRRRRR)!! I get so sick of running up there to get him just because he throws up. CAN SOMEONE CONVINCE THESE SCHOOL NURSES THAT NOT EVERY CHILD THAT THROWS UP IS AUTOMATICALLY CARRYING A VIRUS!!

I'm just so sick of fighting it already. What in the world am I going to do when I have to fight it all over again UG?


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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What about doing Enterolab testing? I would think Dr. Fine would be able to provide whatever documentation the school needs. They don't have to know he's an "internet doctor".


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

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Yah and the gastroentologists office TOTALLY denies that an endoscopy in children as young as my daughter are unreliable. They say that is COMPLETELY NOT TRUE!!

Well they don't even know where to take the biopsy.... I can tell from the pm you sent me you are a very kind, polite person who considers other peoples feelings, perhaps they are taking advatange of this? (GRRRR) ... perhaps you could get your hubby or someone to make a visit with you and give you extra backup?

I guess a diagnosis isn't really necessary, but when she gets in school she WILL need the diagnosis, and I just do not want to have to put her back on gluten (after being off from it for years) just for a chance that something will show up.
Yep I can understand, thats why I'm wondering if the skin biopsy for DH might not be simpler if a bit of a pain literally for her, it could save her prolonged discomfort.

There is no doubt in my mind that she has it,as a matter of fact, I'm pretty sure my 5 yr. old has it too and he just came home from school AGAIN because he vommitted and he's fine (it happens all the time GRRRRR)!! I get so sick of running up there to get him just because he throws up. CAN SOMEONE CONVINCE THESE SCHOOL NURSES THAT NOT EVERY CHILD THAT THROWS UP IS AUTOMATICALLY CARRYING A VIRUS!!
They over react because they don't want to be blamed if it is a virus.... and perhaps if its something more serious then they passed the buck... (like he actually ate sometihng really toxic)...

I'm just so sick of fighting it already. What in the world am I going to do when I have to fight it all over again UG?

Honestly I think that's your problem, you are simply fatigued by the whole process and who can blame you.

An old boss once told me that its the creaking wheel gets the most oil.... I hate to admit he was right.... I hate having to keep nagging people it offends my sensibility but sometimes its just the only way....

Try and relax a bit, take a day from worrying if you can and try and attack the thing with renewed vigor, armed with facts.

Start here, Ill try and find more

http://www.guideline.gov/summary/summary.a...19&nbr=4186


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Angie, why does she need a diagnosis for school? (I have no kids and no clue).


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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Angie, why does she need a diagnosis for school? (I have no kids and no clue).

Neither do I but I read other peoples posts :D

Its proably always better to have a certificate... it shouldn't be teachers should respect parents wishes IMHO regardless but if you want to impress on them about not exposing the child to gluten its much easier with a medical cert... and they are much more likely to follow it letter for letter in case of litigation. In the end its hard for a child to assert themselves like you or I against a teacher telling them play-doh or some other thing is OK...

From what Angie said about the school and sending home her 5yr old then I'd say it would make a big differences if the nurses are more interested in CYA than anything?


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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Angie, why does she need a diagnosis for school? (I have no kids and no clue).

Oh man I really don't like it when this question comes up LOL!! This is a testy subject hehe!! It's just a personal decision based on experience.

The reason that I want a diagnosis when she gets in school is because the chances of her becoming cross contaminated are VERY high!! I NEED the school to know this is not just an ordinary "I'm allergic to cats" type allergy. Those type of allergies are ANNOYING, but aren't usually life threatening. If my daughter has Celiac then every time she ingests anything with gluten she is being poisoned, so I need them to have medical evidence of that. If I just walk in and say my daughter has it without a doctors note they have no obligation (as a school) to take me seriously and they may just assume I'm over doing it (because they don't understand the disease), but if I walk in there with a medical doctors note explaing how dangerous Celiac is then they have to listen and if they don't then they open themselves up to a lawsuit if they don't follow the guidelines to keep her healthy. It's about KNOWING that they take me seriously and that they will make every effort to keep my daughter safe while she is in their care. I definitely have no intention of ever suing the school, but should my daughter have a seizure because they let her eat pizza in class that had gluten in it and I had a doctors note they would be liable, but if I had no note from a doctor then they are off the hook even though I asked them not to feed her gluten.

I know these examples are long shots, but I like to be prepared, and think of all the "what if's" just in case. I have been in this school for a very long time and I KNOW they will take a doctors note WAY more ceriously then they would take my word. There are a lot of parents out there who request that their kids not have things like sugar in school and the schools usually comply, but Celiac is so much more complex then that and the risks are so much greater then the average person understands.

At the risk of going on forever I'll end there. I think it's more about making the schools liable and having leverage to work with. If she starts getting contaminated and we have a diagnosis then the school is forced to try and accomodate us and try to find a solution, but with no note, legally they don't even have to make an effort.


~~Angie~~

DX'd With Narcolepsy In 1995

Dx'ed With Celiac On 12-18-06

Positive Biopsy On 2-1-07

DX'd With Pernicious Anemia 4-24-07

Daughter Has DH, so I suspect she also has Celiac!!

"If Alcoholism was Celiac Disease they would make us drink ourselves into kidney failure before they would admit we had the disease"

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angie, chances are, that when the gi checked your son for EE they also took a biopsy of the duodenum----just ask for a copy of the pathology report and see what it says.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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angie, chances are, that when the gi checked your son for EE they also took a biopsy of the duodenum----just ask for a copy of the pathology report and see what it says.

Good point although I don't know what biopsy tool they use in kids so small?

I know when I had a stomach biopsy years ago they didn't check the duodenum nor would it have been possible with that tool... but I guess these things progress, as I understand it the duodenal biopsy tool has to be more flexible and "drivable" so it can negotiate the stomach into the intestines but perhaps they already use something capable of both in kids...

However I'm still not sure it matters because from what I have read biopsies in toddlers are highly inaccurate and also the toddlers are developing so quickly that damage to villi is repaired much more quickily so the chance of finding the damage is smaller.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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I'm now 57. When I was a baby, and even as high as age 6, I was having a lot of digestive issues, and a lot of it sounds like your daughter. No answers then, though....that was about 1949 thru 1955 when this was going on. Fast forward to 1969, and my mom had been sick for quite a few years, and in 1969 was finally lucky enough to meet up with a doctor who knew about celiac disease. A biopsy was done, and it was official: she had celiac disease. Meanwhile, thru most of my childhood and teens, I don't remember having huge problems, although I did feel I had problems with dairy and tended to avoid it. Now I know that my "dairy" problems were probably gluten problems. Anyhow, at that time doctors told my mom with great confidence things like "celiac disease often affects children, who tend to grow out of it." They also told her that her children might have a 1 in 4 chance of also inheriting the gene. In any case, no one made any connection with my symptoms because they weren't extreme like my mom's.

Fast forward more, and after having a LOT of symptoms throughout my life which I now realize were directly a result of gluten, I didn't get a "real" diagnosis until a year ago, at age 56. Since I'd been suspicious about gluten for a couple of years and had minimized my gluten eating, blood tests never showed anything and the doctors' conclusions were that I didn't have it. End of discussion.

So when I found out about Enterolab, I decided to go that route....an easy way to find out if I had the predisposing genes (I did...both a celiac gene and a gluten sensitive one). I also found out from their stool test that both my IgA and Ttg tests were high, that I was also casein sensitive, and that I did not show evidence of malabsorption (that part is good...possibly due to the fact that I'd been minimizing gluten for quite a long time....but the other tests were elevated because I did eat some gluten).

If I had insisted on sticking with doctors who appeared to have very outmoded notions about celiac disease, its symptoms, etc., I would have spent a ton of $$$ and probably still would know nothing.

I'm continually surprised about the widespread ignorance among doctors on this subject, but what surprises me even more is that when the issue is raised by a patient, they still don't go find out about it.


CAROLE

-------------

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Angie, if you feel so strongly that you need a doctor's note, then I think your best bet is to find a celiac-literate doctor, even if you have to go out of state. You might even try contacting Dr. Peter Green in NY--maybe write him a letter explaining your situation--who knows, he might even write you some kind of note even without making you come in! Or maybe he'd be able to work out some kind of reduced fee if insurance doesn't cover your visit. His office might be able to help you negotiate insurance red-tape, as well. It never hurts to ask--like gfp says, be the squeaky wheel!

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at children's hospitals they have all kinds of tools made for tiny little children----my daughter had an endo with biopsies when she was 8 months old.


Christine

15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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